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ABC v St George’s Healthcare NHS Trust: an arguable duty to disclose familial genetic risks

10 July 2017
By Victoria Chico
Society and Ethics Research Group, Connecting Science, Wellcome Genome Campus, Cambridge
Appeared in BioNews 908

In ABC v St Georges NHS Trust, the daughter of a man with Huntington's disease   sued the UK hospital caring for her father, claiming that they had a duty of care to share the father's diagnosis with her, even against his wishes.

The daughter was pregnant at the time of her father's diagnosis, and claimed she should have been given the information so that she could seek out her own genetic testing. Once that showed positive, (she has now been diagnosed with Huntington's disease) she argued that she would have terminated her pregnancy.

The claim was 'struck out' in the UK's High Court, meaning that it never went to a full trial. The judge, Mr Justice Nichol, was influenced by the wider implications of imposing a novel duty of care on medical professionals, and was concerned that a legal duty of care would undermine trust and confidence in the doctor-patient relationship. Ultimately, the judge felt that managing competing duties of confidence to the patient, and disclosure to their relative, would overly burden clinicians and therefore concluded that the imposition of a duty of care would not be just, fair and reasonable.

On 16 May 2017 the Court of Appeal unanimously overturned the High Court's decision to strike the case out (see BioNews 901). As the appeal was against the striking out, not against a verdict on the facts, the Court of Appeal did not ultimately decide whether a duty of care to the daughter should be imposed. However, Lord Justice Irwin, with whom Lady Justice Gloster and Lord Justice Underhill agreed, addressed each of the High Court's policy concerns and concluded that these didn't preclude the claimant from having a properly arguable position that it would be just, fair and reasonable to impose a duty of care.

The Court of Appeal considered the difficulty that clinicians might experience if they were subject to a novel duty to inform patient's relatives about genetic risks. However, Lord Justice Irwin felt that such difficulties are not new and are already tackled head on in the existing professional guidance by the GMC, General Medical Council (1) and other professional bodies (2) detailing when a clinician might disclose information to a third party in breach of patient confidence.

Lord Irwin noted the clinician is already obliged to conduct a balancing exercise where there is conflict between the patient's interest in maintaining confidence and the relatives' interest in disclosure. This balancing exercise results in a professional obligation; the question for the court was then whether decisions based on this professional obligation are actionable in law.

If legal duties existed to the patient and the third party, Lord Irwin acknowledged that this might put extra pressure on the clinician, as it will no longer be clear which decision will protect him or her from a legal action. However, he did not feel that it followed that it was in the public interest that the clinician should be relieved from that pressure.

According to Lord Irwin, it was not necessarily correct that where confidentiality should be breached that the law should incentivise obligations in one direction but not the other. Thus, he felt that a legal rule which could protect the interests of both parties was a 'properly arguable position'. Ultimately, his view was that the question of whether legal duties which serve to protect the interests of both parties was in the public interest was one on which the court should be 'assisted by expert evidence of the most senior and authoritative character'.

The Court of Appeal decision means that the daughter in ABC gets the opportunity to have the particular circumstances of her case heard in the High Court for a full trial on the facts. Whether this will happen remains to be seen, as the hospital may prefer to pay an out-of-court settlement rather than go to trial.

If the case does proceed to trial in the High Court, we will get some clearer answers about if and when a duty might be owed to disclose genetic information to at-risk family members. If the parties settle however, the Court of Appeal's striking out application will remain the law's last word for the time being.  In this case the issue of what legal duties clinicians are under when they conduct the required professional balancing exercise will remain unclear.

  1. Confidentiality (2009).
  2. Consent and Confidentiality in Genetic Practice, Guidance on Genetic Testing and Sharing Genetic Information (2006) (in place since 2009) provided by the Royal College of Physicians, the Royal College of Pathologists and the British Society of Human Genetics
2 March 2020 - by Professor Anneke Lucassen 
A long-awaited decision in the case of ABC v St George's and others was made public last week...
2 March 2020 - by Jen Willows 
A UK woman who sued her father's doctors because they did not inform her of her risk of Huntington's disease has lost her case...
3 December 2018 - by Eleanor Mackle 
A lawsuit brought against a London hospital by a woman whose father's doctors failed to inform her of her risk of Huntington's disease could result in major changes to the laws surrounding patient confidentiality...
22 May 2017 - by Jen Willows 
A woman whose father has Huntington’s disease has won the right to sue his doctors for negligence, for failing to tell her...
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